If my son could speak

My son, Tariq, is turning 40 this November. He is autistic, as well as nonspeaking, and he has a severe intellectual disability. Like many other parents of nonspeaking autistic children, I have had imaginary conversations with him many times over the years, and I wonder what he would tell me if he could speak.

When Tariq was born, I imagined a future where he would be a better version of me. He would be more patient, more athletic, and have a good life with success, and most of all I wanted him to be happy. When he was diagnosed with autism in his fifth year, I was resolved to do everything I could to help him have as normal a life as possible. Although his intellectual disability is an ongoing challenge, he has done his best.

I tried so hard to change him, and in the end, he changed me. He made me become a better version of myself—a better man, a better father, and a better partner. This is the journey I am still on.

 If Tariq could speak, here is what I think he would tell me:

First. It’s not about you, it’s about me.

No one died, so please don’t mourn for me.  You didn’t get to play baseball with me, or build model airplanes, or do science experiments. We don’t have philosophical conversations, but we do have a relationship. Working through your grief about the loss of the relationship you expected was necessary for you to get on with your life. That’s about you, but it has nothing to do with me. It’s about your dreams and expectations that through no fault of either of us, were unmet.

Autism is not a thing I have, but it is my way of being. It colors every perception, thought, emotion, and experience. I wouldn’t be the same person without it. You talk about dreaming new dreams, so focus on that and on the relationship we do have. None of us are happy all of the time, but I am happy most of the time. Please remember that I love you, and I like spending time with you and don’t want you to be sad.

Second. Be patient.

I understand why you tried so hard to change me, and I’m glad you stopped! Even now when you are impatient with how I naturally act, that feels bad to me. When I hear or sense your disappointment in me, I feel the negativity. Even though I cannot speak in words, I can see, and hear, and feel. I can tell what’s going on with you, and every day I know who is kind and who is mean to me. When people are kind and patient, we get along so much better, and I can do more.

I’ve seen you experience a rocky stress-filled road of getting services and learning how to make a difference in dealing with my autism as an evolving condition.  To get the services that I needed, you needed to convince people about how severe my challenges are which was hard for you to highlight. You would get angry and worried and lose sleep over it. The result was more grief and negative thinking. Once again that affected me, but was all about you, not me. Thanks for advocating for my needs though. Fortunately, those days are over. I am safe.

Third. Be positive.

Just like neurotypical children, I need positive energetic parents who enjoy life, celebrate my accomplishments, and accept me as I am. When I don’t understand what you are expecting, I get confused and frustrated. Positive reactions to what I can do feel good. You often measure my accomplishments in inchstones instead of milestones. That’s an improvement, Dad, but must you still measure them at all? I’m proud of whatever I’m able to accomplish even when to others it can seem very small. Recently, for example, I started helping my staff in the kitchen. I like stirring whatever’s in the pot, and I now put my dishes in the sink.  I also make sure everyone is wearing their seatbelt when we go out, and I always hang up my coat when I get home. I smile when you take selfies with me because you seem to like that. I continue to need your help, understanding, and support in many ways.

Fourth. Let go of your anger.

You’ve written about how the loss of the perfect son you dreamed of was difficult for you.  You wanted to change me but I could not be fixed or cured.  That made you angry. When you were angry around me, it did not feel good. I never wanted to be fixed or cured. It’s not my fault that I wasn’t the child you were expecting or waiting for. I am the only way I know how to be and like everyone, I am sometimes happy and sometimes sad. You didn’t have a clue about how I felt. Once again that was about you because you wanted to fix me.

You finally learned to celebrate what I could do.  This made a huge difference for me in our relationship.  I was still a young child and it made me feel happier, when you seemed to truly enjoy me and accept me as I am. When you were constantly pushing me to do the things that seem ‘typical’, I was frustrated and cranky.   When you played with me and followed my lead, I laughed and smiled because I felt happy.

Fifth. Accept and Appreciate me.

I know everyone has expectations. Please don’t make yours too low or too high. When people’s expectations of me are too low, it seems like they’ve given up on me, but I can do things. Yet, when expectations are too high and I cannot reach them, I become extremely frustrated. I have expectations too, you know. As your son, I expect you to love me and hang in there with me, no matter what.  Some of my autistic peers make progress in leaps and bounds while others like me develop very slowly. There is a lot that I cannot do and will never do.  While both of us work hard and persist in our own ways, I know that my outcomes did not always match your expectations.   

Through it all, I have loved you and you love me. I know that your love for me is unconditional. When you were trying to change me, it sometimes felt like there were conditions. But I see and feel and know now that you love me unconditionally.  Despite your best efforts, and mine, I have never learned to speak, read, or write. Thanks to your love and advocacy on my behalf, I live the safest life possible for me in a group home where I can live with support out in the world.  I love our car rides and walks in the park when you visit.

These days, when you come to visit, I feel a calmer presence with you which brings me happiness as you have come to balance and live with acceptance and appreciation. Keep up the good work, Dad.

Going forward to a deepening understanding

Tariq has a cohort of autistic adults who are a growing chorus which contributes profoundly to understanding autism. Trailblazing Jim Sinclair wrote “Don’t Mourn for Us” in 1992, https://www.autreat.com/dont_mourn.html,  While some amount of grief is normal, getting stuck there, according to Sinclair “is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.” The real grief in Sinclair’s view is not autistic people themselves, but rather that our world has no place for them (or you can say – does not create space for them. Parents are urged to get angry about that and change this situation.

For anyone who wants to understand autism at a deepened human level, listen to and read the advice of autistic adults who are self-advocates, for starters:

  • Temple Grandin proclaims that she is “Different but not less.” 
  • Dena Gassner teaches, “You don’t outgrow autism, you grow into it.”
  • Michael John Carley says, “Acceptance is a start not a finish.”
  • Jennifer O’Toole says “The face of autism is changing. And more often than we realize, that face is wearing lipstick.”
  • Stephen Shore says, “If you know one child with autism, you know one child with autism.”
  • Keep listening to  voices of autistic people that, unlike my son, have been able to communicate in ways you can understand,  and keep reading the work of the Autistic Self Advocacy Network (https://autisticadvocacy.org/)

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44 comments

    1. I have 3 boys with autism. Two are 13-year-old twins with the level of severity your child has. Cry. Cry. Cry. When reading this and shared it to my Facebook. Beautifully written, true and still heartbroken, even though, it’s my heart. Not their hearts. Thank God. 🥀

      Like

    2. In tears reading this! ❤️I work with individuals with various intellectual and physical disabilities in helping them to find gainful employment within their local community. Your words were so true when you said “everyday I can tell who is kind and who is mean” I live by that statement when I work with my guys. I tell people all the time they can sense when people are berating or talking down them and they respond accordingly thru their behavior to that person. I totally felt every word you expressed as I have a son who has cerebral palsy and is hearing impaired. My husband and I have learned so much from him in so many ways it’s remarkable. Thank you for posting this and I wish you and your son much success in your lives and future endeavors.

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  1. Thank you for sharing this, Rob. It is so moving, insightful and sincere. There is such a calm and confident love apparent in the pictures of father and son that you have posted in recent years. You and Tariq are so lucky to have each other.

    Liked by 1 person

  2. Dear Dr. Naseef: Thank you for this wonderful, touching piece. Thank you for all you have done for our Steven over the years and helping us individually and as a family as we learned to live with autism and not constantly fight against it unless circumstances made it necessary for his welfare. Sincerely, Doris Brown

    Liked by 1 person

  3. Well said sir!
    Thanks for sharing this ❤️

    I often imagine the thoughts going through my daughters head, you hit on quite a few of them.

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  4. First of all, much credit for this piece is due to my wife and professional partner, Dr. Cindy Ariel, who challenged me to write this. Secondly, I am noticing that many readers who have liked this post have children who are nonspeaking or who have limited speaking. I would love to hear from you and self-advocates for the follow up to this post which I would like to write in the future.

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  5. A truly thought provoking and touching article. I think all of us really desire the same things…unconditional love and being present for one another. Enjoying moments of togetherness even in our silence….speaks a thousand words without even opening our mouth. Happy Birthday Tariq. You are all very blessed to have each other!♥️

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  6. I love this, thanks for sharing! I have a wonderful non-speaking 6.5 year old autistic daughter who has taught me all new ways of communicating and being in this world. Though I don’t know if she will be able to advocate for herself one day, I am happy to know that she will grow up in a world with more and louder autistic voices.

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  7. Thank you for this article. I immediately sent it to my parents. I have 3 siblings with autism, twin brothers who are 27 and a sister who is 30. I believe my parents shared the same emotions and expectations as you once before. Now being older myself I’m realizing I need to be more patient as a sister and I need to be more present in assisting them to live the best life they can. Thank you again.

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  8. Hi Dr. Naseef this was such a great piece! I’m the Communications Specialist for KenCrest, would you mind if we shared your piece on our social media networks?

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  9. Rob:
    This is so beautiful and so indicative of my journey with Caleb. Caleb will be 31 in January. I still lose sleep over him at times, but I also lose sleep about my NT daughter who is 35. That’s part of parenting. I have shared this with many on my Facebook page and in our closed FB group for parents of children in pediatric palliative care. Tariq changed you. Caleb has changed me. My only three wishes for him is that he is safe, content, and function the best that he can. I just love your sensitive soul!

    Like

  10. Hi there, thank you for sharing these deeply heartfelt words. I am a speech language pathologist and have worked with people who have autism and are nonverbal for 10+ years. I’m curious about Tariq’s opportunities to use augmentative/alternative communication throughout his lifetime. If this is something you’ve written about previously, I’d be interested in reading. If not, maybe you would consider doing so. Thank you again for sharing your thoughts.

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  11. Robert, so beautifully written and such a beautiful message. It doesn’t matter where your child is on the spectrum, as parents we will always worry and today I try as much as I can to fit into Jake’s world and not make him fit into mine. And we thank you for helping us along the right path of success for our son. #respect

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  12. Wow. Touched a nerve here. I recently apologized to one of my 17 year old sons for “not accepting him for who he is.” He was recently invited to apply to the National Honor Society for High School for his good grades. He declined. I have pushed him year after year to “get involved” and join clubs and activities in school, to no avail. He is not able or not interested, it is hard to discern. As much as I see my “advice” as being the golden ticket to a better future for my son, if he is not interested it is not going to happen. So I have to accept him as he is now, today, not so unlike how I was at his age. And I have to trust that he will find his niche in life. And I will continue my delicate balance of offering guidance and learning acceptance of my wonderful son as he is today. And hopefully I can even work on forgiving myself for not being the parent I thought I was going to be.

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    1. Than you for such a thoughtful, soul searching comment. Your love and acceptance will help him find his own way and put you on the road to self-compassion. It sounds like that has already begun.

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  13. Wow! Self-reflection and communication with thoughts spoken and unspoken. I remember reading somewhere else in your writings when it was Cindy who challenged you to say the word “autism” for the first time. How wonderful that parenting your son and your work with other parents and families has taken you to Tariq’s milestone 40th birthday and his “words” speak so loudly for me personally – with so much purpose and heart and soul – back to his Dad. A “Dad” who gives back to so many of us who needed the help to say the word “autism” for the first time, to accept the years that autism stole from us and to forge ahead to bright relationships with our children who became adult children with autism – some of them – true – who spoke so loudly and never spoke a word. I’m so proud of Tariq for giving us so beautifully the words we long to hear. These are the words I long to hear from my son as well.

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  14. Hi Dr. Naseef, very touching. I’m the the Founder of a nonprofit organization, Xiaoyaya Autism Initiative. Our goal is to promote scientific evidence-based therapies for autistic children in Asian Countries and Asian communities in America. We have our Network in Chinese. Do I have your authorization to translate your work into Chinese and publish in our next work? Thanks, Wensheng

    Like

  15. I’m a single mother of a 26 yr old BRION is nonverbal and has severe intellectual disabilities this mean so much to me I don’t belong to any blogs and have no support I came across this story looking to join a support blog and I’m so happy this was the first thing I clicked on with tears I’m grateful for the sharing of this story😘

    Like

  16. Dear Mr. Naseef,
    I’m a mother of an autistic child your words and your feelings in these lines touched me a lot I really felt that I should be more closer to my son and to have a strong relationship with him for the rest of our life. Thank for your amazing letter.

    Like

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